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Spring Break 2017 Update


4ml Prozac, 500mg Zithromax 3x a week, 1.5 mg melatonin, less than a quarter of Clonidine

Ewen is doing well. Right now he is vacuuming and mopping the whole house (all 850 square fee lol) To earn an hour of screen time playing Overwatch.

We have had a few hiccups. He got in major trouble in school for hacking into the computer and writing silly things on a class web page. He said he didn't realize he would get a referral and get in so much trouble since he wasn't hurting anyone and would never bully. He also dropped his grades because he was too busy having fun with his friends. So Mike and I had a meeting with his teachers. He now has a 504 plan since he has had lots of absences.  We are paying close attention so that we can make sure he completes his assignments.

Last month he was having trouble with tics (mostly huffing) and anxiety and so his pediatrician put his Zithromax up to 500 mg every day for a full week. That completely helped and was amazing to get him back to normal and got rid of the tics and the twitching. However, even with probiotics he was craving sugar like a drug addict. So we cut the sugar way down and used honey to sweeten things instead...and upped the probiotics. That seemed to help.

We spent a week in Colorado for Spring Break with Mike's brother and his wife in their gorgeous home that backs up to the Colorado National Monument. Ewen went mountain biking and did lots of hikes...soemthing he wouldn't have done when he was sick with PANS. Mikes brother saw a huge difference with Ewen from the last Spring Break we spent with them at the beach.

Ewen is doing really well in soccer these days and has seemed to have suddenly gotten a new confidence and is back to his old soccer-self

So we are very much enjoying his just being a kid. He is 12 now! He still sees his therapist and she tells me that he is very good about sharing what he needs to. He told me that he told her that he was worried about the airplane and she said that was OK, as long as it doesn't stop him from flying...or that he doesn't use the bathroom on the plane because he thinks it will crash. He said he wasn't at that point so that is really good. I told him that everyone is a bit nervous on the plane anyway...even if they think is fun too.

So that is it for now with Ewen. My youngest daughter who is now, 8, has been having trouble with aching legs and constant lethargy. We tested her mycoplasma which is also high so she has started on Zhithromax a couple of days ago. I hope it helps her. She has been very anxious so we will see if this works for her too. I suppose since this stuff is genetic that it may be something she is dealing with too but on a different level.

Comments

  1. YvetteApril 28, 2017 at 4:57 AM

    I just finished reading all of your posts....in one day.

    ReplyDelete
  2. YvetteApril 28, 2017 at 5:04 AM

    Continued.... My 13 year old had panic attack for first time in his life Dec. 2016, while trying out Adderall for first time for ADD. Didn't realize it was a panic attack until late Jan 2017 (we thought it was an asthma attack.). Long story short.... More trying of medications for ADD, many bad side effects including cutting, depression all of Dec/Jan/Feb, terrible reaction to Zoloft, inability to do any schoolwork or reading. Constant need for distraction. Previously invested in friends and wide variety of interests, all declined. Acted like a caged animal. A different child. Finally a blood test in early April showed high past and current mycoplasma pneumonae. Waiting on Strep tests results and Cunningham panel. Has been on 500 mg of azithromax

    ReplyDelete
  3. YvetteApril 28, 2017 at 5:10 AM

    ....a day for two weeks. Starting to come back. In intensive outpatient anxiety program, including executive function skills to resume school work. Going to school part time. Teachers don't understand. School psychologist worse than no help. Just over a year ago our son had long sickness - sinus infection and "mono-like" virus according to pediatrician. No one tested for mycoplasma.
    Sound familiar?
    Thank you for writing this blog, it has been very therapeutic for me!!!!

    ReplyDelete
    Replies
    1. MomofthreeApril 29, 2017 at 12:44 AM

      Yes...all too familiar and I'm so glad he is starting to come back. I am sorry that you are going through this frightening ordeal, and thankful the accounts of our experience helped you. That is exactly why I wrote it, to help other families going through the same thing. Let me know how he does over time on the Zithromax.

      Delete

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